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Old 01-26-2013, 02:26 PM #1
Kitt Kitt is offline
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Join Date: Aug 2006
Posts: 4,440
15 yr Member
Kitt Kitt is offline
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Join Date: Aug 2006
Posts: 4,440
15 yr Member
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Quote:
Originally Posted by BDEye51 View Post
I have peripheral neuropathy - inherited (mother and 2 sisters) small nerve even though only large nerve is supposed to be inherited.
I have tried the anti-convulsant meds on your list but had severe mental confusion such that my patient record lists me as allergic to anti-convulsants; then onto plus a number of pain meds like Lidocaine patches (allergic to the adhesive), spinal injections, Fentanyl patch, Percocet, and even Butrans (suboxone) patch without relief and lucky me some of the nastiest side effects. Have tried Trileptal & Elavil, Valium and more. I am trying R Alpha Lipoic Acid 1200 mg for the last 2 months but no significant change.
Read-up on Chronic pain and the use of pain medications. A very misunderstood field. Also be open to alternatives - yoga, exercise, meditation, etc. Be very diligent re controlling your diabetes as the only cures I have heard about are for some people with diabetic neuropathy and who seriously control their diet, monitor their sugar levels etc.
I assume you have been tested for other causes like heavy metal (lead) poisoning, B-12 deficiency, trauma and a few other known or suspected causes. Usually a specific cause is not found.
If the pain impairs your sleep, ask for medications to help. If you don't sleep, it impacts you in many ways.
My mother's pain ended when her feet & ankles gradually become numb and then the problem was difficulty walking. My neurologist has noted a slight loss in muscle control & thinks I may also have restless leg so I am trying Mirapex - usually used for Parkinson's disease - to maybe take the edge off the pain (nada so far).
And finally, ignore the ads that claim to cure neuropathy. And if you use Google or just about any search engine you will begin to see ads for neuropathy cures at every opportunity because they have learned your preferences and search habits.
Hi,

What type of inherited neuropathy do you have if I may ask. Thank you.
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Old 01-26-2013, 03:37 PM #2
MikeB MikeB is offline
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Join Date: Jul 2012
Location: N.E. PA
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10 yr Member
MikeB MikeB is offline
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Join Date: Jul 2012
Location: N.E. PA
Posts: 12
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Originally Posted by JohnLemon View Post
About six months ago I went to the doctors because of pain in my legs and hands. I found out I was diabetic and that I had Neuropathy. I have been on a bunch of different medications to help with the pain they have all either offered minor relief or none at all.

Neurontin - No Relief
Cymbalta - No Relief
Lyrica - Minor Relief
Elavil - No Relief


As time has gone on things have actually become worse a burning feeling on my feet/legs/hands/arms and actually pretty much any where if something is rubbed up against it.

After seeing my neurologist and trying these medications he is rather sure that the Neuropathy is not caused by my diabetes. I am to have a Cervical MRI next week. He is hoping he can do something to lower my pain levels until I am able to see nerve disease specialist.

I am wondering if anyone else has had similar issues with these medications not helping and what they have done.

And any other input would be greatly appreciated.
John,
I have severe peripheral neuropathy.
Lyria on a small dose, was not enough. I moved up to 200 mg. 3x. Okay for a while, but I got worse. Then, in addition to the Lyrica 200mg. 3x, I started on gabapentin, now at 600 mg. 3x. These two together, keeps the pain level to a "3". This is the best combination I've found. Only side effect.... sometimes memeory issues.
Hope this helps!
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